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Question regarding my dad getting a brain met


SLT

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Hi there,

I haven't been here in quite some time but I know what an amazing place this is. I don't have a lot of time to come here and be a part of things but quietly reading this board has been a tremendous help to me and my family.

My Dad has been doing well for so long but things have changed for us over the past few months. Dad has taken little treatment and opted for quality of life - he just turned 74. As long as Dad was doing well, we were just waiting until we needed treatment. Well we decided the time had come and luckily for us, just as we felt he needed treatment, my Dad's health plan covered Tarceva (in Canada it's not so easy to get Tarceva). Well, he started having headaches and he's had a lot of muscle pain in his legs the past month. He's been fatigued but not enough to stop him from doing the things he enjoys. They did a CAT scan and there is showing one small lesion in the brain.

When my Dad had radiation to the primary tumour over 1.5 years ago, it shrunk it by half. Should he respond the same to radiation of this brain met? We're seeing Dad's oncologist next week but I'm wondering if Tarceva will still be given and if so does it pass the blood brain barrier?

Thank you so much in advance. This has been our second major bump in the road and it has me really worried. I know there are people on these boards surviving with brain mets and that helps me keep positive...but it's so hard!!!

Thanks again,

Sherri

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Hi Sherri

Sorry to hear that a brain met has developed. Brain mets tend to respond quite well to radiation, and I would guess that if your Dad's cancer has previously had a good response when treated with radiation, there is reason to be very hopeful.

Tarceva does apparently cross the blood-brain barrier. I would presume that your Dad could still receive Tarceva, as the brain met was in all likelihood already there when he started the drug.

Hope that helps, and all the best to you and your family....

Karen

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Sheri,

Since it is only One Met. Did they offer surgical removal. I had ONE brain met and had it surgically removed two years ago. I then had stereotactic afterwards to get rid of any residual left over cells. Where is the tumor located? Does he have balance problems or headaches? I just had surgery last week in the brain To remove necrosis (dead cell removal.) It was in the area I had radiation. I am doing great. Stereotactic Radiation to the tumor does shrink the tumor usually, but surgery is the gold standard if it can be done. Do NOT do WBR, it is not used much for one tumor. Only for 4-5 tumors in the brain. Now this is my opinion and I can't say what is best for your father, I am NOT a doctor. I just know what worked for me...

Wishing dad the best and sending lots' of prayers.

Please keep us posted.

Karen

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Sherri

Karen raises a good point - have you discussed this with his doctors? SRS or surgery are other options....the doctors may have good reasons for wishing to pursue WBR. Either way, you will probably feel better if you investigate all the options......

All the best,

Karen

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Both Karen's have made good points. I am not a Dr

Tarceva is being tested on Glioma (brain cancer) so it must cross the blood-brain barrier.

Sometimes WBR is used on one brain met in addition to SRS or other targeted treatments. The problem is that one met is detected but others *might* exist so WBR is given also

There are some clinical trials using melatonin for brain mets. You *might* want to ask the Dr about this since melatonin I would guess would have little side effects. I doubt that melatonin is being used

for LC brain mets w/o radation. I am not sure what "RPA Class II patients" as mentioned in the trial below

http://mayoresearch.mayo.edu/mayo/resea ... ialsRU.cfm

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All i can offer is our experience and that is that the SRS has taken care of both a one inch tumor (what does that translate to in metric?? i'm terrible with the conversions)and a one cm tumor that surgery was not an option for. Mom also had headaches before she had the tumor's "zapped" and always said she could almost "pinpoint" where the tumor was when they found it. Prayers coming your way! Don't let it get you down!!

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Thank you all so much for your responses! I really appreciate it. :)

We saw both Dad's radiation oncologist and chemo oncologist yesterday and have a game plan to move forward. We were VERY shocked to find out that the brain met is 4cm in size. Dad's symptoms have not been that extreme so we weren't expecting that. His oncologist recommended WBR for two reasons: the size of the tumour and he feels he at risk of there being other areas too small to show up on the CT scan. They are doing an MRI this morning to further investigate and they've started making him a head mask yesterday. The Dr. felt that this was a better choice for dad than the SRS options so we have to trust that he is right. I've read some bad things about WBR but I have also read of thread on here with positive outcomes. We also saw Dad's Chemo oncologist and Tarceva is now on hold until they can stabilize dad's brain mets. The oncologist told us that Tarceva doesn't pass the blood brain barrier so I wonder if there are differing opinions on this. Tarceva was our light at the end of the tunnel and I hate that we have to wait for it!

So for now, knowing that dad responded well to radiation in the primary tumour is my hope that he'll respond well now.

Thanks so much for your support and if anyone has any further advice, I welcome it with open arms!!

Sherri

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Sheri/SLT,

Please Please, read, read and research TOTALLY BEFORE WBR. Read my post in this Forum under WBR. It's your dad's life. Save HIM. I'm not a doctor, just a survivor who CARES. Read Leslie 221's experience with WBR, She was young and basically healthy. Too much Decadron and WBR...

Blessings, prayers and hugs,

Karen

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Iressa and Tarceva are new drugs used to treat advanced NSCLC that is resistant to more conventional chemotherapy agents. These drugs are referred to as tyrosine kinase inhibitors. They inhibit the activity of a substance called epidermal growth factor receptor tyrosine kinase, which is located on the surface of cells and is needed for growth. If any surgery can be performed, a specimen of the tumor could be tested to see if Tarceva is resistant or sensitive to it.

Iressa and Tarceva cell death in cultures of fresh human tumors from previously-treated NSCLC patients may identify patients with favorable prognosis, particularly when treated with Iressa or Tarceva. Clinical oncologists that specialize in individualized treatment of cancer, study how an individual's cancerous cells respond to several drugs. Doctors have learned that even when the disease is the same type, different patients' tumor respond differently to chemotherapeutic drugs. Without individualized testing, it's difficult to determine which drugs are best for patients who don't respond to standard therapies. Temodar (temozolomide) is another new drug that is being used for brain metastasis. These clinical oncologists could test all three drugs to see if they have synergy to the tumor.

The EGFRx™ Anti-Tyrosine Kinase Profile

http://weisenthalcancer.com/Professiona ... ionals.htm

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Welcome Sherri,

Just wanted to add my prayers for your dad. I know there are risks to WBR, but I did also want to add that there can be positive stories too. My husband had WBR because he had multiple brain mets. His oncologist felt that he could do Gamma Knife, but that wouldn't target any small mets that couldn't be seen on scan, or and cancer cells floating around up there. He recommended WBR because it would hopefully kill the mets known and unknown. Also, if the WBR did not work at controlling it, then Gamma Knife was not excluded as an option. He COULD follow WBR with Gamma Knife if we wanted. Now, I'm not sure why, but Keith did not take Decadron following the radiation.

He did have a lot of severe exhaustion, and some mild difficulties concentrating and remember things. But not too bad. He still worked full time, and heck with all the stress I'm not that great with concentrating or remember things I need to do either.

Now understand my husband is young and strong, 34. But he had been through a year and a half of chemo prior to this radiation too. He had the WBR in September 2004, and his MRIs have shown the mets there to be stable up until recently. His recent scans shows slight growth, but very minor and the onc did say it could be a difference in scan angles so it is classifying it as still stable after a year and 4 months. His worse side effect was that he lost all his hair, and it still hasn't returned. Not too much of a sacrifice for control over this damn beast.

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My Dad's doctor did not recommend WBR for his brain met. He said no WBR unless my Dad had three or more mets to his brain. Dad had Cyberknife on his met and it worked really well. By three month checkup doctor could barely see the scar tissue. Side effects were mild. He developed a second brain met while on Tarceva for three months. Cyberknife was used again sucessfully. Doctor said they are unsure if Tarceva crosses the BBB. He also said Tarceva works best in people who have never smoked. Maybe another opinion would be good before WBR. Sounds like your Dad really wants to maintain his quality of life above all else. I know how hard it is to help your parents make these decisions. Hang in there you are doing a wonderful job.

Denise

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My step dad never questioned or researched WBR for my mom, they just said they needed to sart right away so we never had a chance to find out more and the dr really didn't fully explain the POSSIBLE side effects. My mom had 6 tumors, all ranging from pea size to marble size. The protocol for gamma knife was 4 or fewer. I am no doctor, however, I think that each case needs to be looked at and evaluated individually and not just decided on 'by the book'. WHen everyone responds so differently to each treatment, it is frustrating that they even have a standard protocol.

If your dad is going for quality, then maybe they can try gamma on the tumor and dealt with any smaller mets later. The amount of damage from WBR may really reduce the quality of his life.

Yuo and your family are in my prayers! Cancer is an evil thing.

Kim

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As reported in MD Anderson's OncoLog, in the past the only treatment for multiple metastases was whole brain radiation, which on its own had little effect on survival. There are now a variety of effective treatment modalities for people who have fewer than four tumors. Dr. Jeffrey Weinberg at the Department of Neurosurgery at MD Anderson has said "with a small, finite number of tumors, it may be better to treat the individual brain tumors themselves rather than the whole brain." Anderson is equipped with Linac Linear Accelerator. The critical idea is to focally treat all tumors.

http://www2.mdanderson.org/depts/oncolo ... -05-1.html

The results of a study at the University of Pittsburgh School of Medicine reported that treating four or more brain tumors in a single radiosurgery session resulted in improved survival compared to whole brain radiation therapy alone. Patients underwent Gamma-Knife radiosurgery and the results indicate that treating four or more brain tumors with radiosurgery is safe and effective and translates into a survival benefit for patients.

http://newsbureau.upmc.com/UPCI/GammaKnifeStudy2005.htm

The UCLA Metastatic Brain Tumor Program treats metastatic disease focally so as to spare normal brain tissue and function. Focal treatment allows retreatment of local and new recurrences (whole brain radiation is once and done, cannot be used again). UCLA is equipped with X-knife and Novalis to treat tumors of all sizes and shapes. For patients with a large number of small brain metastases (more than 5), they offer whole brain radiotherapy.

http://neurosurgery.ucla.edu/Programs/B ... Intro.html

Of course, surgical excision is the gold standard of treatment for surgically accessible lesions. Many studies in the medical literature clearly demonstrate the efficacy and superiority of surgical resection followed by focused radiation that includes only 2-3cm beyond the periphery of the tumor site. This begins as soon as the surgical incision has healed. Doctors at UCLA and MD Anderson say that even for patients with up to four metastases, surgical excision of all intracranial disease has been shown to provide the long survival with good quality of life, and has the same prognosis as someone who has only one brain tumor. The University of Pittsburgh study has taken it to four or more.

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Thanks to everyone for your advice and encouragement. The bad experiences with WBR on this site has my stomach in knots. Dad is supposed to start treatment this Thursday. I wonder if the dose of radiation has any part of good and bad results? Dad is getting low dose radiation for 10 days versus high dose radiation for 5 days.

If they are saying that Dad's tumour is over the size limit for doing stereotactic radiation, then what can I do really? We discussed having it surgically removed but our oncologist (who I trust is trying to do the right thing for dad)says that Dad's recovery time from the surgery would more than likely set him back further than this is likely to do. Dad is 74 and not as likely to bounce back from any treatment as easily as those who are younger than him. If there were that many people experiencing such severe reactions to WBR, wouldn't they stop doing it or give patients more warning? Maybe I'm just naive? Also, he's fighting for his life RIGHT NOW - can I truly worry what a year from now will bring?

I haven't discussed what I have read here with my father yet and it has me in a lot of turmoil. If Dad has this done and something happens, I will hold myself responsible for not stopping them. But if he can't have SRS due to tumour size and WBR is our only option, we really have no choice because if he doesn't seek treatment immediately, this tumour is likely to take his life. :(

Sherri

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Sherri,

My husband Alan had a single brain met that was 3.0cm x 3.5cm that was crushing his brain stem. Alan did have 10 WBR treatments back in July 05. So far the side effects have been minor. some short term memory loss and some hearing loss in his left ear. He then had 15 IMRT treatments to the tumor itself. Alan has had 2 MRI's since all the radiation and NO SIGN OF ANY TUMOR!!! So I would say we had an ok experience with WBR. Alan's quality of life is very good right now and looking back I would not have done anything differently. I just wanted you to hear a success story with WBR. What might happen months down the line no one knows, but I would not trade this time I have had with my husband. Prayers going out to you and your family during this difficult time

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Those at increased risk for long-term radiation effects are generally children less than 2 years of age and adults over 50 years of age. However, whole brain radiation therapy has been recognized to cause considerable permanent side effects mainly in patients over 60 years of age; it can affect up to 90% of patients in this age group.

Hyperbaric Oxygen Therapy (HBOT) is now a useful therapeutic option for patients with confirmed symptomatic whole brain radiation-induced necrosis. Until the new millenium, the only treatment for patients was pentoxifyline or heparin therapy, and it was almost always unsuccessful. I've received a number of emails from radiation necrosis patients who had HBO Therapy, and (the good news is) it works!

http://www.oncolink.upenn.edu/treatment ... s=33&id=51

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Sheri,

Don't beat yourself up. Each case is individual. Just know, you and dad are in my prayers for a speedy and complete healing...

Hugs,

Karen

PS**** Sheri, read the websites GD Pawel has referenced on HIS post. IT talks about WBR. READ!!!!

READ!!! Don't assume. Mets HAVE been treated as large as 5-6CM WITH Stereotactic. Look at TRish in Florida. Her husband had Large tumors and 18 of them. He had SRS and they are ALL gone. NO sign of ANY cancer anywhere. What a blessing...

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I am so sorry the turmoil you are facing. When it comes down to it (I am learning this as I go) that you have to trust the doctors an their staff to do the best thing. ASK QUESTIONS, DO RESEARCH and talk to the doctors. That way you will never look back and say hey, I should have at least checked. You can look back and say, I researched, I questioned it it, and I am doing the best that I can in regards to his care and that is all you can do, especailly when it is done in love and care and concern.

In your Dad's case I am sure the benefit outweighs the risk. It is easy for me to sit back and say I think my mom should have take a different route but, these are professionals making the calls and they have to know more thatn me thats for sure. When it comes to WBR and its effects on my mom, I have to remind myslef that sure, mom is changed, but she is ALIVE, and I have no doubt in my mind that the WBR made that possible.

You and your father and your family are all in my prayers.

Kim

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Dear Sherri

You are in such a tough spot!

Like I mentioned in a pm, I would consider getting your Dad reviewed by a neurosurgeon, if time permits - I don't know how long it takes to get an appointment where you are. A neuro would probably be in a better position than the oncologist to determine whether your Dad is a good surgical candidate.

BUT, whatever happens, always remember that you are doing the best you can for your Dad, and it is HIS decision in the end.

All the best,

Karen

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